Well, I've had my endo appointment, and he point-blank refused to recognise any leaning towards Hashimoto's whatsoever, but said it would be prudent to monitor my bloods once a year! He offered to give me a tablet to go into hospital to check my cortisone levels, but completely dismissed all my symptoms, or that they had any relation to any thyroid disease (even though they fit perfectly), and kept referring to my benign thyroid nodules. I tried to stand my ground, asked him to explain the elevated thyroid peroxidase antibodies, the out of range T4, and the fact that research shows TSH of over 10 is way too high to begin treating someone, but he just said my TSH was well within range, blah, blah, blah, and that we shouldn't narrow it down to thyroiditis.
I kind of tuned out at that point. I told him he was wasting my time, that he had no intention of helping me, and I walked out on him. He was the most condescending, arrogant, patronising specimen I have ever had the misfortune to cross paths with. I would rather suffer in pain and discomfort with my symptoms for the rest of my life than go through an experience like that again.
I just wanted to thank you all for helping me, because you all opened my eyes to so much information that I wasn't previously aware of...but apparently I don't have a thyroid disease after all, so I guess frequenting this forum is perhaps not for me after all 🙁.
Inflammation
CRP HS - 1.53 mg/L (range less than 3)
Iron Status
Ferritin - 51 ug/L (range 30-264)
Vitamins
Folate Serum - 20.5 (range more than 7)
Vitamin B12 - Active - 90.5 pmol/L (range more than 37.5)
Im so sorry that you had such an awful appointment. With your FT4 under range and over range antibodies (indicative of Hashimoto's), an enlightened endo (in my opinion) should have recommended a trial of Levothyroxine.
This forum is certainly for you….. many members are here because they have had to self advocate for their own health. Moving forward, I hope the fact that others have had to ‘battle’ to get treatment will give you strength to continue advocating for your own wellbeing. Keep posting- you are not alone!
Have you started the vit D mentioned in your last post?
Have you looked at dailyiron.net and other links provided on ways to increase iron in your diet?
Have you considered a gluten free trial for a couple of months? Eliminating gluten lowered my thyroid antibodies significantly (although they still remain out of range) and improved my mental and physical health. It’s not for everyone…but maybe worth a trial. Some choose to ask GP for a coeliac test whilst still eating gluten. I’m not coeliac but certainly gluten intolerant.
Thank you so much for your kind response. Today, right now, I feel like giving up. I've been battling symptoms for 4 years or so, probably more like 5 if I think about it. I've been to GP after GP appointment, laid myself bare to them, exhausted myself describing all my symptoms to the nth degree, all to no avail. I just feel completely deflated and all done in trying. However, next week is another week, so I know that I need to dust myself off, brush myself down and put my boxing gloves on.
I am taking vitamin D and will ensure that my iron levels are optimum. I am trialling gluten free, but finding it hard 🙁.
Chin up - do you have the Patent to Patient recommended list of Endos and thyroid specialists NHS & Private held at head office of Thyroid UK - the charity who support this forum ?
if not just email admin @ thyroiduk.org - asking for same -
and you can always start a post asking for recommendations - we can't openly discuss any medical professional and your post closed to viable replies - but there is facility on here for Private Messages and then your Chat Icon that looks like a paper plane should light up if any one replies as this other screen is a ' one to one ' - with no admin oversee.
"You’ve been given advise on what you need, what you need to keep saying during the appointment with the Endo is “why is my T4 significantly below range, shouldn’t it be in range?”
With your TSH being in range, though higher than optimal, you’re likely going to have to battle for treatment. But keep turning it back to the below range T4, this is the actual number they should be looking at.
Other guns to bring out, “if my TSH is ‘normal’ but my T4 is under range, should we be looking at the rest of my pituitary hormones to see if that’s working properly?”
and also in slow dragons reply on that same thread , mentioning central / secondary hypothyroidism ,
Some degree of central hypothyroidism can happen with Hashimoto’s, as thyroid levels hop up and down so much TSH can give up trying to keep up"
' central hypothyroidism' is the avenue you need to push on in any future appts with endo's. NHS won't /cant initiate levothyroxine for 'primary hypothyroidism' /hashimoto's unless / until TSH is over range on 2 occasions . and as there is no treatment available for the autoimmune aspect of hashimoto's ,then until TSh is over range they will not offer you any treatment for hashimoto's.
the issue is that your FT4 is below range and your TSH has not risen appropriately as it should in primary hypothyroidism ,, the TSH should rise when FT4 is too low . yours has not , suggesting some degree of 'central' hypothyroidism (ie , a pituitary /hypothalamus )problem
'primary' hypo mean the problem is with the thyroid gland itself
'central / secondary' hypo means the problem is not with the thyroid but the pituitary / hypothalamus are not sending enough TSH to the thyroid to stimulate it .
they are not exclusive , it's possible to have both going on.
however .... take a deep breath... unfortunately ,getting diagnosed with central / secondary hypo is extremely difficult... and long .
Hi, I actually took printed off notes with me from those threads, as I thought they were significant points, and I didn't want to forget them, so I did refer to them in the appointment. He was having none of it, wasn't even listening. He specialises in diabetes, so I'm not surprised!
Is it possible to get treated privately with levo? I have no idea if this would be something I could afford long-term, but maybe I could get an initial appointment, and see if I fare any better.
Click on "Read the list of available tests" and on page 3 of the pdf you'll see
Urine Iodine Test:
Specimen requirements: Urine
Cost: £76
Order Code: END25
Turnaround time: 5 - 10 days
Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.
Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.
Assuming iodine level is LOW …. do NOT start any iodine supplements but take results to THYROID specialist endocrinologist
My heart goes out to you. I've been in your position. It took me 8 years to finally get diagnosed after no one would take me serious, even though I could no longer function and take care of my family. In the end, i was so poorly, I was housebound, zero energy and could hardly walk on top of all classic thyroid symptoms. I asked to be referred to chronic fatigue clinic, and it was actually a chronic fatigue consultant who said I had a thyroid issue and how he saw this a lot with patients.
I ended up going private as my nhs endo appointment was 12 weeks wait, which is nothing these days .
My tsh had finally gone over range 4.27 , ft4 13.8 and like you a highish ft3 6.2. I've read that this happens when your thyroid is really struggling.
How could your endo not think your results were off. How could a ft4 of 9.8 convert ft3 to 5.3, something isn't normal.
If I had seen an nhs endo I would have likely have been dismissed too.
Fortunately the endo I saw physically examined me, it was summer and hot. I was freezing cold to touch. My heart rate was low, breathing rate low but what clinched it for me my slow ankle reflexes, something that I've never heard anyone mention they have had done but us a test performed years ago. The endo was so surprised how slow they were compared to my blood results. Physical signs are something that aren't looked for these days but can help diagnose you, like in my case.
It's so difficult to carry on, I know, but don't give up.
Wow, that's awful, 8 years 😞. I think I'm heading that way, the housebound thing is certainly starting to ring true.
Like you, I can't get warm, especially my extremities, no matter how warm the environment. I suffer with slow heart rate/ bradycardia too, and my breathing is often affected. I've never heard of slow ankle reflexes, but thank God your endo seemed to be in tune with what your body/physical signs showed.
Thank you so much for your kind words of support 🙂
I imagine we are the tiny minority who have had this simple test performed.
My endo tested them recently. Considering the amount of T3 I'm on they were normal. I show no signs of overmedication which they now know. We now work together and they understand I'm slowly regaining my health and hopefully reversed my nafld, cholesterols all normal, crp and kidney now normal. Increasing my T3 has been key in all this. My low body temp is almost normal, feeling so much warmer, chronic constipation is getting better and slowly losing weight, the first time in 20 years. I really hope this continues but i have a dexa scan next week and know the outcome can change everything 🤞🤞🤞
Just wanted to add to my original post - the cortisol test the endo offered (that I subsequently rejected), is called a 'cortisol overnight dexamethasone suppression' test - a medical procedure used to diagnose Cushing's Syndrome - a condition where the body produces too much of the hormone cortisol. Apparently it mostly affects people who have been taking steroids medicine for a long time (never taken). Very rarely it can be caused by the body producing too much cortisol, usually as a result of a tumour in the pituitary gland in the brain or the adrenal glands above the kidneys. Symptoms are: increased fat on chest and tummy but slim arms/legs (well, I've put on a bit of weight, but it's more generalised than in just those areas!), a build-up of fat on back of neck and shoulders (nope), red, puffy rounded face (nope), skin bruising (nope), large, purple stretch marks (nope), weakness in upper arms and thighs (nope), reduced sex drive (well maybe, but hey, I feel bloody ill most of the time!!), depression (if I wasn't before, I am after today!!), high blood pressure (nope). Oh, and it mostly affects young women (nope).
Is it just me, or was the endo completely clutching at straws/barking up the wrong tree...or maybe barking mad??!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Medichecks results
Medi checks blood results
Blood test results - anxiety 
High FT3 
latest private blood results...please help 
